Researchers found patients were more likely to be informed only after their disease had advanced

By Dennis ThompsonHealthDay Reporter

TUESDAY, March 24, 2015 (HealthDay News) -- Doctors are not telling a majority of their patients diagnosed with Alzheimer's that they have the degenerative brain disease, a new report shows.

The research, conducted by the Alzheimer's Association, involved patients whose Medicare records listed treatments that are specific to Alzheimer's disease.

However, when the researchers asked the patients (or a caregiver as a proxy) if their doctor had informed them that they had the brain-robbing disease, only 45 percent said they had been told so by their doctor.

By comparison, more than 90 percent of people with the four most common cancers -- breast, colorectal, lung and prostate -- said they had been told about their diagnosis.

"These really low diagnosis disclosure rates [of Alzheimer's] are really reminiscent of what happened in the 1950s and '60s, and even into the '70s, with cancer," said Beth Kallmyer, vice president of constituent services at the association. "Cancer was called the 'c-word.' It didn't get talked about in doctors' offices. It certainly wasn't talked about in the general public," she added.

"That's all changed now, and if you don't remember that, you can't even imagine how it was back then, and it is that way now for Alzheimer's disease," she added. "People are feeling like they can't talk about it, and we need to change that."

The researchers found that Alzheimer's patients are more likely to be told of their diagnosis only after the disease has become more advanced, and their ability to participate in their care has diminished. "As the disease progresses, it's pretty hard to deny something is going on," Kallmyer said.

Failing to promptly notify Alzheimer's patients of their diagnosis robs them of the chance to live life to the fullest and play an active role in planning for their future, since many learn of their illness only after their faculties have started to drastically decline, said Keith Fargo, director of scientific programs and outreach for the association.

These patients also miss out on clinical trials that might improve their condition, since most trials only accept people with early Alzheimer's disease, explained Kallmyer.

Fargo said, "We believe patients have a right to know that they have this progressive and fatal brain disease. Telling the person with Alzheimer's the truth about their diagnosis and prognosis should be standard practice."

The association decided to look into patient notification after receiving many anecdotal reports of people who did not receive their diagnosis in a prompt manner, Fargo said.

Researchers obtained Medicare claims data for 2008 through 2010, which showed how many people had been treated for Alzheimer's during that time.

They then compared that information to patient responses in the Medicare Current Beneficiary Survey, a continuous survey used by the U.S. Centers for Medicare and Medicaid Services to track the effectiveness of its medical coverage.

The survey directly asked participants, "Has a doctor ever told you that you had Alzheimer's disease?" It also asked about whether they had been told of a diagnosis of cancer, diabetes, heart disease or stroke. When a beneficiary was unavailable or unable to answer, a family member or caregiver provided the answer.

About 45 percent of people who received Medicare-funded treatment for Alzheimer's had been told by their doctor that they have the disease, the researchers discovered.

Keeping that in mind, the investigators also looked at current Medicare data regarding cancer disclosure. They found that nine out of 10 cancer patients are being told that they have cancer.

Doctors commonly cite fear of causing emotional distress as one of the main reasons they fail to disclose an Alzheimer's diagnosis, Kallmyer said.

"Everybody can understand this. If you put yourself in the doctor's shoes, nobody wants to give this diagnosis," she said. "If you've seen Alzheimer's, you know it's a tragic disease to watch. But you know what? They don't want to give the diagnosis of pancreatic cancer either, which means the person's going to die in a couple of months, generally. There are other fatal diagnoses that doctors are giving, whereas with Alzheimer's it's different."

Other reasons given by doctors include uncertainty about their diagnosis, insufficient time to fully discuss treatment options and support services, a lack of support services, and the general stigma that surrounds Alzheimer's, according to the report.

The 2015 report also outlined the latest statistics regarding Alzheimer's:

An estimated 5.3 million Americans have Alzheimer's disease in 2015, including an estimated 5.1 million people aged 65 and older, and approximately 200,000 individuals under age 65 who have younger-onset Alzheimer's. Barring the development of medical breakthroughs, the number will rise to 13.8 million by 2050.

Almost half a million people aged 65 or older will develop Alzheimer's in the United States in 2015. Every 67 seconds, someone in the United States develops Alzheimer's. By mid-century, an American will develop the disease every 33 seconds.

Two-thirds of Americans over age 65 with Alzheimer's are women.

Alzheimer's is the sixth-leading cause of death in the United States and the fifth-leading cause of death for those aged 65 and older.

Between 2000 and 2013, the number of deaths due to Alzheimer's disease increased 71 percent. During the same period, deaths decreased from heart disease, stroke, HIV and prostate and breast cancers.